The Power of Words

The Power of Words

MRKH Support and Awareness, the Facebook Support Group for the Beautiful You MRKH Foundation, Inc., received this series of messages yesterday on our Facebook support group. Reading the profound negative effect that word choice had on a community of women supposedly served by this mobile app reminded me that words have power. They have power to increase a person’s self-esteem and they have power to take it away. Calling a congenital medical condition a disease harms the very people that the greater medical community wants to help. If you are a physician, a nurse, a receptionist, a caretaker, a member of the insurance community or someone creating a mobile app to help people, please take the time to THINK about the meaning of your choice of words. Interestingly, on the online iTriage page, when I typed in MRKH, the tag line was condition. Had the people who designed the mobile app chosen to use the term condition, would the following conversation have taken place?

This upset me. I wanted to read what my health app would say about MRKH If it had anything about it and it came up as a disease. I lost it. It made me feel sick. makes me feel defective.

Response #1:

Hugs, while we are technically defective…as in we were born without all the right parts…it doesn’t define us as women. We just have to embrace our creative side and figure out what we’re going to do to compensate for missing a few parts. My BFF would tell you I certainly have a few screws loose, so missing parts is inevitable! You’re not alone in MRKH…I’m actually impressed your app knows about us, and think it’s pretty cool even if it does call it a “disease”.
April 9 at 7:32pm · Like · 8

Response #2

Definitely not a disease! I’m impressed that it came up in your health app though…my own doctor didn’t know what it was! Keep your head up:) you’re not defective or any other negative thought that may cross your mind. You’re unique:))) never forget that<3
April 9 at 7:45pm · Like · 12

Response #3

Infertility is considered a disease so maybe since mrkh is related to that. Idk that is difficult to see in writing though. 
April 9 at 9:26pm · Like · 1

Response #4  

A disease is any abnormal condition affecting normal functioning of an organism’s body, so technically yes, MRKH is a disease. That’s okay though, sure we have a few defects but that doesn’t make us any less, and it doesn’t have to define us. Hold your head high!
Yesterday at 12:33am · Like · 7

Response #5

Sending hugs
Yesterday at 1:23am · Like · 2

Response #6

I’m a mother to one of your MRKH sisters

First, let me say how wonderful it is that MRKH is recognized in an app! The word is getting out about it and that’s fantastic!!!

I’m glad your here to gain support from those experiencing the same feelings.

I too am concerned and upset with the way it is being described – disease or syndrome. Yes, when you dig enough it will describe almost any diagnosis as a disease. But when you add the education level of most of society, the word disease describes something that is attacking the body and/or organ.

I can tell you my daughter struggles with the word disease. Yes, we have went over the definition many times. To her the word disease means something that progresses and needs treatment. When she hears the word “disease” she envisions someone that has something like cancer or something she can catch. Clearly MRKH isn’t listed in those categories.

When she hears the word “syndrome” she understands it’s not something that has laid dormant in her system and now needs medical treatment. Most of society understands syndrome to be something that a person is born with, like Aspergers Syndrome. It isn’t something you can catch or transmit to another person.

I never like to compare any one ailment to another’s. Cancer, Aspergers Syndrome are completely different from each other as well as MRKH. They are all different and need to be defined as such.

I just feel that syndrome is an easier way of explaining the diagnosis than a disease. After all it’s in the title – Mayer Rokitansky Kuster Hauser SYNDROME 
Yesterday at 10:01am · Like · 10

Original Poster: that was the best explanation. Thank you so much for this. Thank you all of you. 
Yesterday at 10:08am · Like · 2

Response from response #6 Your welcome sweetie! I’m here to support you and your sisters and my daughter(s) any way I can! I hope I don’t offend or step on toes, because that’s never my intention 
Yesterday at 10:14am · Like · 3

Response #7 Thank you from me as well; Very well said; 
Yesterday at 10:18am · Like · 3

Response from Response #6 Your very welcome dear!! And thank you!! I am glad to know that my words and opinion help in some way!! I wish I could do more to help!! ))))Hugs((((
Yesterday at 10:22am · Like · 3

Response #8 Wtf

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MRKH comes to the surface in Australia.

“In my life, I will avoid all circumstances where public speaking is required of me. In fact, I have been known to tell my past employers that if they ever ask me to speak in public; in front of my peers, I will more than likely resign first”. This was not a threat, this was my reality. As it happens, this statement was also my opening line – and confession – as I commenced my speech at the first Australian MRKH Support Group for women at The Royal Hospital for Women in Sydney, Australia; in addition to “I am really quite scared”.

I am writing this blog whilst sitting on a flight heading to a work conference in the Gold Coast, Queensland. The hour flight is precious and uninterrupted, as I dissect what has actually happened to me over the last year. For many years I believed that the universe owed me big time! I was due a very long and over-due reimbursement from life.  It was my consumer’s right to be compensated for the opportunities, experiences, laughter, and love that I had been denied for the last sixteen years. Furthermore, I wouldn’t have to lift a finger to receive it. I could sit in my office or slouch on the sofa every weekend for an entire year and it was only a matter of time before the cheque would arrive in the post, singed ‘The Universe’.

I started writing eleven months ago. What started off as one short story, turned into my first blog; the blog that released me from my shame and the palpable, demanding guilt I shared with myself daily. The second and third blog entry swiftly followed and the fourth inched its way out of me after a period of great sadness and raw confrontation. What happened after that was magical – I allowed life to happen and had a heartfelt reconciliation with ‘The Universe’.  I professed, after many tears, “it’s not you, it’s me”, and “please The Universe, can we be friends once again?”

Earlier in 2013, I wrote an email to The Royal Hospital for Women exploring if there was an opportunity available for a support group and a face-to-face forum for women who have been diagnosed with MRKH. After a short wait, I received a reply; yes, there was!

Overwhelmed with an immediate and encouraging response, I ventured to meetings and exchanged many emails to coordinate and plan the Support Group with The Royal Hospital.

Jennifer Morrissey, a wonderful, warm and approachable woman soon became the person who would share this journey with me. She would become our advocate and spend her precious evenings folding letters and her days speaking with executives and the hospital board, seeking endorsement to plan the support group with me. Our meetings would last two hours, sometimes more and with each visit I was learning the facts and, at times, the harrowing realities of MRKH. 

Dr Rebecca Deans, a gynaecological physician with extensive experience of MRKH, attended the fortnightly meetings and acted as our MC at our very first group meeting, in addition to presenting on MRKH and Embryology and the relationship between the two. Dr Deans, shared with me, that for many years, she wanted to see a support group form and that perhaps this was our time to do so. 

Both Dr Rebecca Deans and Jennifer Morrissey both worked in The Queen Charlotte’s and Chelsea Hospital London where I was originally treated back in 1997 and suddenly, the world felt like a smaller place. I would meet with Dr Deans and Jennifer regularly to discuss how the day would unfold and what we hoped to achieve from this relationship. Dr Deans once said: “please call me Rebecca” and I was suddenly in awe of what was happening. My silent monologue often started with “what have you done Ally, you are changing. Embrace, smile and set your intentions now!”

During one of the planning meetings, I was informed that Emeritus Professor Michael Bennett had expressed his enthusiasm and support of the MRKH Support Group Meeting and would be presenting on the day. The moment I shook Professor Michael Bennett’s  hand, I honestly felt like I was in the presence of something quite remarkable.  He was like Gandalf from the Lord of The Rings. He was polite and stoic and absorbed every comment in the room as he, (the only man) sat listening and I am sure I saw a very small tear as the day concluded. I had the pleasure of sitting next to Professor Bennett throughout the day and as I was about to offer my speech, I leant over to him as though he was my teacher, my friend, and I asked “how do I do this?” He paused for a moment looking longingly at the ceiling searching for the correct words, to then find my eyes and wisely utter, “Speak as though they are your friends, as they are indeed your friends”. That was all I needed and so I continued to offer the story of my childhood, my diagnosis of MRKH, and the challenges and the tears I had experienced along the way. Of course, in hindsight, I wish I had said different things; perhaps my account was a bit dark and too honest?  However, I remembered to speak as though I was delivering the 6.00PM news bulletin (as news readers always seem confident), I made eye contact and I confronted the fear that paralyses me. I almost think I may be good at it.

Mothers cried and offered gratitude and daughters looked at presentation slides with focus and a wanting to understand what lies beneath our skin. I, for one, felt that this was my diagnosis day, as the white noise and denial clouded any formal explanation that was offered to me from my doctors back in 1997 and here I was, a patient looking on.

A woman, whom I can now call my friend, shared her story and journey of MRKH, discussing surrogacy and the challenges that she had encountered as a woman whose true purpose and desire was to be a mother. To go through life, battling instinct versus body, to welcome her daughter into the world, her miracle as she says. She was the mum she had always dreamed of, and as I panned the room for response, there were only tears.

After the biggest day of my adult life, I phoned home and just sobbed in pure joy.

Now the real work begins.

You will often read the words, ‘you are special, unique and beautiful’ and although I know you are all of these things, my instructions on how positive affirmations can change lives, will often sound hollow and futile. The messages often mirror from one girl to the next, as do the realities and fears that we share and by me saying that it will be ‘okay’, is far too easy a sentence to write. I do however believe in the struggles and have found myself only recently in a position where I questioned how honest I could or should be. So, in a bid to avoid sounding disingenuous or cured from the harsh difficulties of this diagnosis, I would like to ask if I ever meet you or speak with you, can we become friends and work through this together?  – I am simply humbled by you reading this far- my sister, thank you.

- Ally

 

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We are one in many, we are unique, and we are fighters.

They say ignorance is bliss but not when it comes to your health. Any detriment can creep up on you with no realization whatsoever. But what’s worse, Ignorance positioning itself in your corner or that of a figure as vital as your doctor or pediatrician? What if you went in for a regular check-up, received an examination, and unexpectedly heard the words “Wow I’ve never seen this before?” Those would be the most heart wrenching words I think I’ve ever heard in my entire life. Prior to my diagnoses, I had seen many surgeons and gynecologists who had never even heard of MRKH or had rarely ever seen such a severe case of endometriosis similar to mine (rookie move, I know). How could one on such a professional level attend medical school for 8+ years and not even brush up on a defect that affects 1 in every 4,500 women around the world coming from müllerian anomalies that effect 1 in every 23 women? It is so hard to be in this position but these are the obstacles that give us much strength and inspiration to persevere. Sometimes it is our personal obligation to educate the world.

I take incredible pride in my advocacy for the Beautiful You MRKH Foundation because our primary mission is to give a voice to the voiceless. With this voice we must enlighten those around us and continue to comfort those with similar difficulties to ours. It is almost baffling to think that someone with so much knowledge knows so little about rather common defects but that is why we were given these conflicts because we are pioneers. When I first started out in this difficult journey, I never thought I was able to take initiative and make a change myself but it was with the help of this incredible foundation and the support of my friends and family that I discovered this would give great purpose to my life. I though to myself that maybe this had been my mission and I was to speak out in favor of women who suffer from all kinds of müllerian anomalies. Do not ever think you were given these or any other life detriment because you are unlucky or undeserving of a smooth life. Instead, be thankful that these things happen to you, as physically and mentally painful as they can be, because you were believed to be strong enough to handle it. We are one in many, we are unique, and we are fighters. We are first, we are pioneers, and we are warriors.

Although you may feel alone, do not let it happen. Educate those around you and inspire them with the strength you have acquired by overcoming these obstacles. Most importantly, if you are in the first stages of this journey, educate your doctors, pediatricians, and ob/gyns because a cure begins with them but it all begins with us. As I am still young and still facing many troubles, I continue to see a plethora of doctors on a monthly basis. I know that I am still obligated to inform them no matter what their specific field of medicine consists of. The moral of this blog, and the point that I am trying to make, is that we are always given the conflicts we face for a reason. We have a voice and that is our most powerful resource. I know we cannot eliminate these anomalies entirely but we can most definitely change the results and turn all negative aspects positive by supporting each other and uniting in sisterhood!

- Carly

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My body. My choice.

Kristen picture

I think back ten years ago when I was sixteen to the moment I was first diagnosed with MRKH, and the whole thing seems like a blur. I can’t remember much besides feeling overwhelmed and completely confused, and I struggled with a strong feeling of isolation for a long time. It wasn’t until just after my twenty-sixth birthday that I found the Beautiful You MRKH Foundation and suddenly my eyes were opened to just how many women there were in the world struggling with the same things I was. It was such an incredible feeling to know I wasn’t alone! One thing really stood out to me, though, as I developed relationships with these women online… everyone I spoke with had already resolved their “not being able to have sex” issue. Whether by surgery or dilation, it seemed that they had all done something.

I am almost twenty-seven years old and have still done nothing to resolve that issue.  And I am okay with that!

The main reason I did not have anything done when I was first diagnosed was because the doctors who diagnosed me knew nothing about MRKH.  It was apparent that I was the first woman they had met that had the syndrome, and they didn’t have much information for my mother and me on what to do.  One doctor did mention that there may be a surgery that could be done, but he didn’t know anything about it and he had no information for us on who to talk to about it.  Basically, they explained to me what was different about my body, told me it was “very rare”, and sent me on my way.  My mother and I spoke about it, and I decided that it wasn’t something I really wanted to pursue at the time. Had I been adamant about getting it fixed, I know she would have searched everywhere for a doctor to help me. However, I was dealing with enough just with the diagnosis of MRKH and I did not think that adding the stress of a surgery on top of it was the right thing to do (at the time I was not aware dilators even existed). So I just pushed it to the back of my mind.

As I got a little older, I started thinking more about it. I knew that I would have to do something about it eventually, but I honestly just didn’t think I was ready. I saw a doctor when I was 20 who mentioned that there were options for me, and I told him I wasn’t interested. He seemed a little surprised by that… but when it came down to it, it was my decision. He tried talking with me about it, but I brushed him off.  I wasn’t going to change my body because a doctor said I should. It’s my body, and I wasn’t going to allow myself to feel pressured to change something I wasn’t ready for.

Once I hit twenty four, I thought I was ready to discuss my options. I spoke with a gynecologist, who referred me to a big hospital in the closest city. He wrote the information down on a card and I left with it in my pocket. I stared and stared at the card for weeks, willing myself to make the phone call. And then I realized, “if I have this much anxiety over this, maybe I am still not ready!” So I tucked the card away.

This year, at age twenty-six, I “came out” to all my friends and family about having MRKH, something I had kept mostly hidden for the ten years since my diagnosis. As I shared my story and spoke with other MRKH sisters I found through the Beautiful You MRKH Foundation, I really started to come to terms with my diagnosis. I started feeling more comfortable with it, and with myself.  And it hasn’t been until this point in my life that I have really started to accept the body that I was born with.  And now that I have begun to accept my body… now I feel like this is the right time for me to explore my options.

I understand that every woman is different in how they handle MRKH, and waiting like I did was a personal decision that I made for myself.  I do not regret my decision to wait.  I am glad that I waited until I was comfortable with my body before making any big changes to it. I am happy that I did not allow myself to feel pressured by others to do something I wasn’t ready for. And more than anything, I am thrilled that I have the support of so many MRKH sisters standing behind me.

Unlike when I was sixteen, twenty, and twenty-four, and feeling anxious and terrified at the thought of having anything done, I feel excited when I think of the prospect of getting this process started. I feel like I truly waited until the time was right for me, not for when anyone else told me it was right. I’m finally ready for this next chapter in my life, and I can’t wait to start it!

Kristen

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Lifelong bonds and a changed perspective; the benefits of attending MRKH Day at the University of Michigan.

901037_160356914137850_415804077_o   965925_160356867471188_1424659249_o  When I first found out that I had MRKH, I was told that 1 in 4,500 women have this medical condition.  Really? Could that be right?  I remember thinking, I’m all alone with this and no one will ever understand how I feel. However, I soon discovered that I was very wrong.

About a year and a half after my diagnoses, I was at one of my regular appointments for MRKH when my doctor told me about a conference that was going to be held at the University of Michigan Hospital.  The seminar was for women with MRKH and their parents in order to meet with one another and various physicians to learn more about MRKH and other’s experiences.   Initially, I thought, “Why would I go?  I have already learned everything there is to know about MRKH online and I would probably be the only girl to show up.”  However, after thinking a little longer and conversing with my mom, we decided “why not?”  We had nothing to lose; I had already told all of my close friends and family about MRKH, I might as well see what this conference is all about.

My mom and I anxiously drove to Ann Arbor not knowing what we were going to be getting ourselves into…  I was relieved when I noticed that three other girls with MRKH showed up at the conference along with their parents.  From the moment I met these other girls, I immediately felt a bond with them.  For the next few hours, we were able to share our individual stories and struggles with one another and had an educational lecture from doctors and psychologists about everything that MRKH entails. I discovered there was a lack of accurate information about MRKH online and I truly did not know as much as I thought about MRKH prior.  Thankfully, one of the other MRKH women at the conference provided me with the Beautiful You MRKH Foundation website and Facebook page where I was able to find a great amount of valid, educational information regarding this medical condition.  Not only did it provide me with more accurate medical information, it also gave me the opportunity to meet online with various women throughout the entire world who have gone through similar obstacles as myself.

Not long after this conference, I had a strange Facebook message from Miss Michigan 2013.  First, I was very confused why a beauty queen would want to talk to me, or how she even found me.  While reading her message, I was in complete shock.  Not only did she have MRKH like me, but also attended the same university as me and was simply looking for a friend that could relate to her.  I started to really question the 1 in 4,500 statistic…If one of Michigan’s most beautiful and talented women had MRKH, who else could be near me had this “rare” condition?

In May 2013, I attended MRKH Day at University of Michigan, but this time things were a little different.  The drive to Ann Arbor was a lot more exciting, between my mom, my dad, and myself. We were all eager to make some new friends and meet up with all the women from the past conference, Miss Michigan, and the cofounder’s of Beautiful You MRKH Foundation.  To my surprise, an entire conference room was full of women with MRKH and their parents! I was in complete awe of the turnout.  After settling in our seats, I heard one of the girls next to me say “Hey there, Amanda!  I think we know each other…” Sure enough, it was someone that lived within 5 minutes of my house.  We had grown up playing sports against one another, had similar friends, and have been to various parties at the same time; yet, somehow neither of us knew the other had MRKH.  There are no words to describe the excitement that I experienced when I realized someone else, from the neighboring small town of where I lived, knew exactly what I was going through.  My friendship with her is like no other; where most friends try their best to understand what I am going through, she actually can fully understand and relate to the same daily struggles, and is within just a short drive away.

Between the MRKH conferences and the Beautiful You MRKH Foundation, I have been able to gain a sisterly bond with not only women nearby, but also women throughout the entire world.  I have come to realize that even if it is scary, doing something out of my comfort zone can be rewarding.  If I would have continued to feel sorry for myself by thinking I was all alone and that no one would ever understand, I may not have ever met any of the wonderful women that have become my lifelong friends.

My advice to women with MRKH, or anyone struggling with feelings of isolation is to simply reach out to another person, even if you’re a little nervous about their judgments.  Who knows, you may have more in common than one would ever think. It may take you out of your comfort zone to think about attending a conference, but after I entered the room and saw so many other women like me, it was worth it.

Xoxo,

Amanda

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Krystina’s Adoption Story

I can still remember sitting in the room at the doctor’s office. She came in, soberly, and closed the door. I saw the tears in her eyes and I reached for my mom’s hand…knowing what was coming. She told me I had no cervix or uterus. My ovaries had stopped forming and had dropped in location. I had virtually no vaginal length.

She painted a bleak picture. She told me I would never have a normal sex life. I would never get pregnant. So many nevers. So many thoughts of the futures taken away from me. I had just turned 17. I had a boyfriend. I was in love. We talked about marriage and baby names. He was there when my ovaries were removed. However, we broke up a couple years later and I remember thinking that I should stay single – what man would want me?

Jeremy did. Jeremy told me that the lack of reproductive organs didn’t make a difference to him. I was 19 and while sad about my infertility, I was ok with it. I didn’t want kids anyway. I was so young and knew that adoption was always going to be an option. We got married two years later and decided that we would talk about expanding our family when I was 25.

We settled into marriage. After a couple years, I started aching for a baby. My younger sister got pregnant and it almost tore our relationship apart. I sank into a deep depression. I lost all desire to live. I didn’t want to even try. I struggled for a while and then decided to attempt therapy. I sat in the therapist’s office and told her this was my last resort. And it worked! I went on an antidepressant and did my therapy and it worked.

Jeremy was offered a job in California, so we packed up and left Michigan. It was there I got a phone call…were we interested in adopting a baby? We weren’t home study approved or necessarily looking, but I wanted to be a mom. We said yes and began to plan for a life with a baby. A couple months before he was due, we found out we were lied to, and the baby would stay with the birth parents. I was crushed. I was angry. I mourned. And then I got a call from a high school friend.

She was pregnant with her third, and couldn’t parent. Were we interested? We talked about it and became what I called “cautiously optimistic.” We did our home study. We bought a fire extinguisher and first aid kit. One of the bedrooms housed a changing table. Tiny clothes fill the closet. I packed two large suitcases, a stroller, car seat, and carry on bag. I was on the way to meet my daughter.

When I landed in Kansas, I started crying. The birth mother would be meeting me at the airport and I would see her pregnant belly for the first time. I had to sit and compose myself for a few minutes before I got off the plane. There she was. We had only two days before the scheduled c-section and I was beyond nervous. I talked with the birth mother, C, about my hopes and plans for the future.

Then the big day came. They wheeled C back in the operating room to prepare her, and I sat in a chair in my scrubs. Booties covered my shoes, my hair in a net, mask on my face. They told me it was time and I followed the nurse back. There was C in the room. We both had tears in our eyes and I held her hand while we chatted. Then they asked if I wanted to see the baby be born. I stood up and there she was. 

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I followed her to the warming room, only leaving to quickly show C a picture of her. Rosie was born at 7:52 AM and at 7:58 AM, I held her. From there on, I never left her side. Everyone called me her mommy and I sat in disbelief. I had a baby! She was mine! I loved her and kissed her. I kept asking if I could kiss and hold her and everyone laughed and reminded me I was her mommy.

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We stayed in the hospital for a few days in our own room, visiting with C several times. When I went to my mom’s house to await clearance to leave the state, I discovered being a Mom to a baby is the hardest thing you will ever do. I suffered from postpartum adoption depression…sleep deprivation will wear you down. But Rosie and I made it. We managed. We learned together. 

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It took 7 weeks for everything to get pulled together for us to leave. Lots of paperwork! Rosie and I got on the plane and were on our way. Everyone kept complimenting me on my baby…how pretty she is, how sweet, how calm. I soaked it up and smiled. I already knew what an amazing baby I had!

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We are now home and Jeremy is settling in and learning the ropes. We had to be apart for that 7 weeks, only seeing each other for 4 days. He had to work. It’s amazing having someone else to do this with. Years ago, I never thought I would be a mom. How would I afford it? Would someone want me to adopt their baby? For 10 years I kept faith in God and believed somehow things would work out.

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Never give up. Never stop hoping and dreaming. None of us can predict the future. None of us can say for sure where life brings us. I’m so grateful for my daughter. We will finalize in November and she will be forever ours. We are a family of three now. MRKH doesn’t have the right to take anything away from us…not even being a mother.

ImageWith love,

Krystina

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My Truth

Unbeknownst to you (the reader), this is probably my sixth attempt at writing blog number four. I only have one very valid reason, and ten rinky-dink excuses, as to why I continue to delete paragraphs daily and make cups of coffee (that I don’t even want) in a bid to avoid writing and essentially remain in denial of what I am facing. (I am actually going to make a coffee now, but that’s only because I intend on sitting here and be nakedly honest with myself and not flounce around the ‘must write blog today’ task which has appeared on the last sixty days’ worth of to-do’s).

My journey commenced, through writing, some six months ago. For those who have read my story, you will know that when I refer to my challenges, I flip back in time to when I was a young gal on the brink of a very big and messy road ahead. Usually (and I use this word loosely), life does find its way back to some sense of tailored normality. I’ve previously mentioned the awkward conversations and the stares amidst confessionals but, for me, MRKH went back in its box. The fact that I reflect with so much humility and humour is a testament of my acceptance, or so I thought. How cocky I have possibly become. I have spent so much time looking back, not only have I walked bang into life’s door, I have stubbed and broken my big toe in doing so. I wouldn’t say I am old; granted, I am too old to join the Olympics or study ballet at a professional level, I am too old to stay in bed for days and wonder how electricity in the house just appears and, I am way too old to stay out until 3AM and not expect to feel it the next day. Thankfully, I am too old for boob-tubes, seesaws (so I was told) and hand-outs from dad (which I promise to pay back at Christmas), but there is still a massive part of my mentality that believes I am still twenty-one.

I have time to toy with careers, and homes, and be non-committal to marriage and mortgages. I can travel the world and bask in yoga and the exploration of my spiritual self with no fear of debt or over-draft. I am actually very grateful. My excitement comes from Christmas and cuddles with my parents and what fad or freedom I can schedule six months from now. Then one morning, eight weeks ago, life happened.

My world and perceptions were shortly to change and be shaken up like a fizzy can of soda. More worryingly, so did my anxiety and fears. I was faced with a phone call which took me on a twenty-eight hour journey across the world to be by my mum’s hospital bedside, with nothing more than a randomly packed suitcase of neon coloured tights and a handful of woolly jumpers when landing into an unusually hot British summer. As a side note, with gratitude, thank you God for not taking her that day and allowing me to see her courage and willpower to make a full recovery. You didn’t want her, but I do.

It was then; whilst sitting neatly folded up in the throne like chair of the hospital ward, pensive and quiet, I had this wave of fear. No, not fear. Fear is too placid. It was as though MRKH was a bare-knuckled boxer adamant to go the full twelve rounds with me and I just stared, searching for saliva, into nowhere.

Oh. My. God. Who is going to be here for me when my time comes? Who will bring a carefully drafted list of questions for the doctor’s consultation and a clean pair of flannel pajamas? Who will pay my bills when I can’t and who will know my ‘look’ when I’m tired and need quiet? Who will kiss the tip of my nose and provide a comfort that no nurse or friend can? I cannot envisage my children’s heads poking around the curtain, smiling and hopeful. For the first time in nearly a decade, MRKH had found its way back into my world and now I have so little time to choose or change the course of my future, if indeed I know what that future should be. The concept of loneliness and the probability that I will likely experience such loneliness, when at my most vulnerable, is confronting and jammed.

So, this is why I have not been able to write? I by no way negate the role of a husband or partner but I am certain, that because of my anatomical make-up, unless I fill my life with exception and magic, I will have to accept a life without children; a reality and void that is going to be very hard to fill. And boy oh boy, that was very hard to type. Please, please, please don’t think that I am not for one minute happy and thrilled about those who are so blessed to have beautiful children. My best friends are wonderful mothers and it is a joy to see them tinkering through family life. The birthday’s, Band-Aids, first steps and snotty noses are sweet and delicate. My niece and nephews, perfect. Equally, my freedom has become one of my most prized routines, with holidays in heavenly locations and evening meals edging on disgraceful, unhealthy and simple. My continued journey and practice of yoga is enlightening, purposeful and bliss. But what if all of this is not enough? I’m sure I would have pretty babies, although I probably shouldn’t be so shallow as to say it (but I do have nice eyes) and I also know that I have an abundance of love which frankly, not even ten puppies could use up.

MRKH is not me, not in the least. But this realization is as frightening as the day I was diagnosed; I still harbour the same instincts and expectations as any other woman. I often wonder, is it because I drop a teaspoon so easily; is this nature’s way of telling me to avoid handling humans? I am serious, I don’t know why that person is able to and I am not. They say you grieve for the family you can never have, perhaps I need to plan for the one that I know is possible? Do I even want a family?

Perhaps I am just one of those people who tap into anxiety and fear more easily than others.

But, with a sneaky suspicion and a glint in my eye, I feel this life is going to be okay!

-Ally

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